Four years ago, 24 year old Phumeza Tisile from Khayelitsha, Western Cape, lost her hearing due to the side effects of the drugs she had to take during a harrowing three-year journey to conquer extensively drug-resistant tuberculosis (XDR-TB).
“I wouldn't wish anyone to go through what I went through with drug-resistant TB. The drugs alone are a nightmare; becoming deaf because of a drug’s side effects is life-destroying. “
~ Phumeza Tisile, XDR-TB Survivor and Activist
Despite her deafness, she pushed ahead to become a vocal national and global advocate for better drug-resistant TB (DR-TB) treatment and access to medicines, so that DR-TB sufferers do not have to face the terrible treatment side effects which include hearing loss and psychosis.
Phumeza has blogged about her experience, inspiring countless other TB patients around the world to complete their arduous treatment.
Against the odds Phumeza has the chance of a lifetime to get her hearing back.
She is an excellent candidate for cochlear implant surgery but she needs to raise $20,000 by 13 February 2015 (updated 2015/01/16) to pay for this specialised procedure.
>> In her most recent blog, Phumeza describes in detail what it was like to lose her hearing.
>> Read why Phumeza was nominated for the Mail & Guardian Top 200 Young persons Award.
Phumeza's story in full:
This courageous young woman from Khayelitsha in the Western Cape, South Africa, has been battling the silence about the suffering caused by drug resistant TB tirelessly, despite losing her hearing completely to one of the (second-line) TB drugs she had to take. Ironically the offending injectable drug had been ineffective, like the majority of other TB treatments for patients suffering from XDR-TB (extensively drug-resistant tuberculosis).
After being on death’s door three times over a period of 3 years and 8 months, Phumeza defied the odds – and the crippling treatment side-effects – by defeating XDR-TB. She has channeled this extraordinary grit and determination to become an outstanding national and international advocate for better TB care.
Together with her MSF doctor, she co-wrote a petition, Test Me, Treat Me. The petition calls on world leaders to prioritise improved access to TB diagnostics and treatment, as well as to provide more funding to develop better treatment regimens for drug-resistant TB. She delivered this petition with over 55,000 signatures from around the world at the World Health Assembly in Geneva this year. Phumeza recorded her journey and became an inspiration to XDR-TB patients around the world through her blog, which has received over 50,000 hits.
Phumeza has also been very active nationally. She has called for more equitable patent laws, delivered inspirational talks to DR-TB patients, and directly petitioned the Medicines Control Council to register a more affordable generic version of the drug that saved her life - linezolid is currently beyond the reach of most at more than R700 (70USD) per pill. She has also conducted countless print, online and broadcast interviews on the subject, despite her hearing difficulties.
Phumeza’s enduring wish is to resume her studies at the Cape Peninsula University of Technology, to equip herself properly to pursue her life goal of TB elimination. She has been assessed as a very strong candidate for cochlear implants, and her surgical team is ready, but without financial assistance bilateral implants are not possible.
Tuberculosis still claims three lives every minute globally and is the leading cause of death in South Africa. The disease has taken so much from Phumeza, but she has already given far more back: courage for those that come after her, inspiration for those on the front lines, and a voice for the millions in need.
Please see links below for more info.
- Phumeza Takes the TB Manifesto to the World Health Assembly
- Phumeza: Cured of XDR-TB
- Phumeza Meets South African Singing Sensation - LIRA
- Lira singing with MSF MDR-TB patient, Phumeza Tisile
- MSF TB patient Phumeza Tisile - Khayelitsha, South Africa
- Phumeza: Life with XDR-TB (Tuberculosis)
- My life with TB (news24.com)
- Phumeza's TB&ME Video Blog: Where I Live
- Tuberculosis: Test Me, Treat Me, Sign the DR-TB Manifesto
Flipboard: “Test Me, Treat Me” Campaign